I have written a book on the politics of autism policy. Building on this research, this blog offers insights, analysis, and facts about recent events. If you have advice, tips, or comments, please get in touch with me at jpitney@cmc.edu

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Thursday, January 14, 2016

Knowledge Gaps

A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.

Given the considerable state and federal expenditures on autism and the potential for strong economic impact of needs for long term care (Knapp et al. 2014), these policy gaps deserve special attention because they are only one link in the chain that yokes better outcomes for the entire population of people with ASD to necessary improvements in services, research, training, and policy (Doehring 2013). Given the considerable expenditure in time and money the government is also making to have researchers submit their research data to a national data base, it seems somewhat paradoxical that actual data that might clarify the mysteries of state to state variations are lacking. Indeed in many ways we are missing an important opportunity to understand what are essentially 50 different (or more) approaches to autism in the various states at all levels (schools and beyond). This lack of information seems particularly unfortunate since so many ASD initiatives fall short of expectations because they are based on the assumption that a change in one of these links will be sufficient: a new intervention will not be accessible if it cannot be implemented through publicly funded programs; a new mandate to provide insurance will not change outcomes without properly trained personnel, and so on. Ensuring that the educational definitions of ASD are updated, or mandating that professionals conduct certain types of assessments, is just a start: it would depend upon properly trained personnel, which may require changes to graduate training programs; it may require changes to ensure that these personnel have the time to conduct these assessments, which may affect the overall number needed and require new funding or entail a reorganization of existing resources. Weak links between research and policy can put individuals with ASD at risk for very negative outcomes that are entirely preventable given what is known about effective intervention (Doehring 2014).

Demonstrating how to close these gaps is itself a research priority. Understanding the most significant contributor(s) to these gaps in educational assessment could help us to understand other gaps in assessment or in intervention. Systematically documenting how programs integrate services, research, training, and policy to create better outcomes would help in the development of strategies at the local, state, or national level that make best use of available resources. This may require the convergence of best practices in research and in public or private sector innovation. Widening the focus from an emphasis on rigorous methods and careful consideration of specific findings to broader policy implications will make the work of researchers even more relevant.